kvolland
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kvolland
SpectatorChristine –
Welcome to the family and try not to get too freaked out. It did to me in the beginning too. There is a thread out there that has people’s milestones on it…..it is quite comforting to see that there are those who had made it many, many years with this disease.
The biggest woohoo! is having a resection. And it sounds like you are on your way. MSKCC is a great place to get a second opinion. And we highly value second opinions and even third opinions if needed.
Good luck and keep us posted.KrisV
kvolland
SpectatorKrassi –
I agree the Chloraseptic is awful…..there are lozenges you can suck on that work pretty good. The other thing that you might think about is if she has an thrush infection. It might not be evident in her mouth but could be in her throat. There are a couple of medications that might work for that….prescription so talk to docs….Nystatin is the best. It can be either a swish and swallow or a lozenge that can be sucked on. My husband had it a couple of times to. Another thing that can help too is what we call Miracle Mouthwash which is compounded formula here. It is nasty to but it helps numb things up….usually has viscous lidocaine, liquid benadryl and often Maalox. Others have the Nystatin in it along with hydrocortisone. Every prescriber has their own recipe. My husband hated it but it helped with the burning he got during radiation.KrisV
kvolland
SpectatorKrassi –
We have here in the US some stuff that might help…..hopefully you can get it there. For dry mouth we use stuff called BioTene. It comes in several forms such as a gel you can wipe in your mouth or a mouthwash or even a toothpaste/mouthwash. It is an enzyme that is similar to saliva that helps a lot. The other thing is sucking on a cough drop or a sour candy of some sort….lemon drops are a good one. As for the sore throat getting good moisture in her mouth should help with that. My husband used Chloraseptic throat lozenges. They have a small amount of a numbing agent in it so it can nu,b a sore throat. It’s the same medication that is used in OraGel for baby teething issues. I would think if you can’t do this at a pharmacy or other store then you should be able to get it online.As for the pain of laying in bed. I would see if you can get her up to a chair at times during the day. The other thing to do is make sure she is repositioned often….side to side is the best, even if it means placing a pillow under one hip and shifting weight to the other side. You may ask for a pressure relief mattress. She is probably at risk for skin breakdown like pressure ulcers.
Good luck and keep asking questions.
KrisV
kvolland
SpectatorDearest Krassi –
So sad the you have had to join this family. As has been said you will find a wealth of information from us. And yes this is a strange disease. My husband had been cancer free for almost 2 years after his surgery and it came back. He was gone 9 days after we knew for sure that it was back. Terrible.
As for the nausea I am not sure of medication names for you but I will tell you what I would suggest here and you can see if it’s being used. First line would be prochlorperazine then ondansetron. These should be given routinely such as every 6 hours or 8 hours whether she has nausea or not. Then there are other meds like Emend (arepitat) which is a little stronger but there are some restrictions for use with that. When my husband’s nausea was so bad during his radiation treatment we used lorazepam (Ativan) 1 mg every 4 hours to help….this made him sleep but usually if you are asleep you aren’t vomiting. Make sure that any things she eats or drinks (if she can) is soft, easily digestible with limited fat in it…..fluids are often easier to deal with.
If you feel that she is getting closer to the end it might be time to talk to the doctors about palliative care or hospice. The goal then becomes quality of life rather then quantity so all they are dealing with is symptom control such as pain, nausea, shortness of breath. They can help with a lot of the problems she may have. We unfortunately did not get much of a benefit since it was such a short time.
Hope this helps.KrisV
kvolland
SpectatorFred –
So glad things are going good for Chris. It is always rough. I know there is a roller coaster ride that goes with this cancer.My husband had gram-negative infections several times. These are usually gut bacteria like E. coli, Klebsiella or others like that. Our infectious disease doctor, GI doc and surgeon said that those types of infections are very common with resections due to the rearrangement of the gut. The small intestine connection to the liver can sometimes “back up” gut bacteria into the blood stream. Mark was hospitalized three times for significant infections. Twice we came home on oral antibiotics and once on IV antibiotics. The one that worked the best for us was Levaquin which is the only antibiotic that works exactly the same orally as IV. Our infectious doc gave us a refillable prescription for this antibiotic and we kept it on hand at home for “just in case.” I used it once for an infection and kept him out of the hospital. The other thing they did was put him on Ursodial 300 mg twice daily and that was supposed to keep the bile moving and keep things from “backing up.”
Hope this helps.
KrisVkvolland
SpectatorIzabella –
Welcome to this best family to support you through this. I am sorry that you are having to go through this. You will find this group will be able to assist you and your family navigate this.You can do a search of the posts but using the search button on the header. Targeted therapy would be looking at the genetic makeup of the tumor and see if there is a specific treatment targeting a mutation that you have like the BRAC or BRAC2 mutations…..they do this some with breast cancer and other cancers. It is an option to look into,
Good luck with everything and keep us posted.
Hugs,
KrisVkvolland
SpectatorWelcome to the family, FlowerLover. We are a great family but one not everyone wants to be a part of. Matt is correct in that the fluid in his abdomen is called ascites and it is a sign that the liver is not working properly. The liver starts to get a hard and not process well so fluid/blood back up and then the clear part of the fluid in the blood leaks out into the abdomen. Normally the fluid is not infectious although once in awhile it will get that way from something else. Draining it is the only fix. They can put a permanent drain in and it can then be drained at home. As far as what he should eat, increasing his protein intake will help drawn some of the the fluid back into his blood.
Also watch closely for changes in his behavior. The liver cleans ammonia out of the body and if its not working properly then the ammonia builds up. It can cause changes in the brain which would manifest as a significant behavior changes often paranoid, call be hallucinating, agitated or some people get real lethargic and sleep a lot. If these start happening then I would get him to the ER.
One thing your husband could do is talk to his father about what his goals in life are now. Does he want to have everything do to prolong his life or is he just looking to love as comfortably as possible? I would recruit any other family members that are a part of this and have a family discussion so every one hears the same thing. If he wanting to fight then definitely a second or even third opinion. However if he wants to just be at home and be comfortable then it might be time to talk about hospice. They can keep him at home and comfortable. The sooner you can start that the better they can help.
As for mowing the lawn and overdoing it….that’s a man thing. My husband was still trying to do things he shouldn’t be doing even in the week before he passed. Your FIL is probably frustrated adn angry at the whole process…..and being a man makes it worse. He wants to stay busy and keep his normal life. I would say let him do it as long as he can…..yes, he is hurting and yes, he probably should let someone else do it but he still can. In the long run it probably won’t matter much. You might offer to make some easy to fix meals for in the freezer. Then just wait for when they need help and rather than offer to help just do it….or hire a lawn service for them.
Sorry things are so rough. My husband battled this for two years and there were times I shook my head and grimaced as he tried to do something…..his fingers and hands hurt so bad when he got cold but he was still hanging Christmas lights.
Good luck and keep us posted.
KrisV
kvolland
SpectatorErashid –
My husband had the same surgery. It took him probably 6 months or so to get back to normal. They do a lot of stuff in the belly when they do the surgery so it take a while for everything to become normal again.
The pain in the right should is the same type of pain that can be seen from gall bladder issues. I would suggest limiting fat in her diet and definitely talk about some sort of digestive enzyme to help break things down better. Also something like Gas-X….a simethicone product…..will help break up the gas bubbles and that may help with the pain. You may need to ask at the pharmacy to help find it but that might help.
As for the incision, scar tissue will often itch and can be very dry for a long time after surgery. I would suggest washing with soap and a very mild soap then apply a good moisturizing lotion to the area a couple times a day….something that might have Vitamin E in it.
Hope this helps and keep us posted.KrisV
kvolland
SpectatorFred –
I know people say you can’t live on nutritional shakes but you can. I have had many many people that live on those alone. You can look for shakes that are more calorie dense….Nestle believe it or not is one of the biggest suppliers of these supplements. If he is having difficulty with his stomach getting full and hurting you may want to talk carefully about any kind of feeding tube…..they can sometimes make that worse….ask about a J-tube which is a little further down the gut. Nutritional IV is probably a better choice for short-term. These are just suggestions of course but be sure and ask a lot of questions about both procedures…..risks, benefits of each….and my favorite question…If it was your family which would you do?KrisV
kvolland
SpectatorFred –
Unfortunately infections can be a part of the process. My husband had three hospitalizations for sepsis (bacteria in his blood) after his resection. Once after his port was placed for chemo and then again after his first two rounds of chemo. There were two more times after that where I was able to keep him our of the hospital by starting antibiotics at home as soon as I notices symptoms. They never really figured out where it was coming from and everyone had their own ideas. The GI doc said it was from narrowing where the liver and the small intestine come together. He thought there was too much swelling which caused the bile to back up. He started Ursodial 300 mg twice daily for that….never were sure if it worked or not since he had two more episodes after that. They were sure it was his port finally so they pulled his port out and he did the bulk of his chemo without a port or PICC line.As far as appetite goes, Mark’s was always terrible when he was sick with the sepsis. He would just pick at his food. We tried to stay with a more soft even liquid diet. He would drink a lot of protein shakes. Also sometimes food that is too warm or too cold can irritate the stomach so try stuff that is kind of room temp or lukewarm. Also small high protein meals…..we did the protein shakes with frozen fruit, a couple scoops of ice cream, protein powder, yogurt and a little milk. The other thing you can do is make jello and instead of adding cold water, add something like Ensure clear or another clear protein drink (IsoSource is another one). It adds quite a bit of protein and it’s also considered a fluid. Fluids are the most important.
Good luck and keep us posted.KrisV
kvolland
SpectatorLee –
I was going to say it might be the starts of an infectious process of some sort. Then when I saw the fever and chills part I knew you had done the right thing. He may have a blockage in one of the stents or just having the stents. The IV antibiotics are the best. My husband was hospitalized three times for blood infections and we were able to keep him out twice more when the infectious disease doc gave us a script for antibiotics. Good luck and keep us posted.KrisV
kvolland
SpectatorDearest Maggie –
Welcome to the best family and really none of us want to be a part of it. Six days instead of six months is terrible to have to deal with something like this. I just lost my husband on April 30th to this disease. He had been diagnosed in May of 2013 and had surgery in June. Chemo then chemoradiation and he had been cancer free for two months shy of 2 years when suddenly it returned. It was found on a CT scan take for a totally different reason. Initially they thought it was something else. Then he had a biopsy on April 21st when we found for sure it was a metastatic cancer. I finally got someone to read the pathology report on the 27th and found it was the cc back. He passed on the 30th.
I am so very thankful that he went as quick as he did rather than suffered through so much pain and indignity. It does leave you wondering and saying “what if” for a long time afterwards. In encourage you and your family to still get in contact with your local hospice, even though he never utilized their services they will have support groups and such as needed.
And you dad can still help, make sure you complete the Patient Registry for him and you can even look into the Mayo study as they are looking for people who have the cc but also for people who do NOT. My husband’s entire family signed up for it and I made sure that the biopsy tissue from the last round was sent to the study.
We are always here.Love and Hugs,
KrisVkvolland
SpectatorCarol –
Welcome to the best little family no one wants to be a part of. My husband was stage 3b when diagnosed two years ago. He had been having what I thought were gallbladder attacks off and on for the five years prior to his diagnosis……we found out that it was probably the cancer all along since his gallbladder was fine.
It is a hard road and it it good that your mum has help coming in. I would also suggest that you make sure you are taking care of yourself. Sometimes we forget to do that.
I know others will chime in too. And I know that we have at least a couple members who are close by to you who have been down this same road.Love, KrisV
kvolland
SpectatorUnfortunately it can happen….and as Marion said sometimes with little or no warning. My husband was hospitalized three times…..twice three days after chemo and once three days after his port was placed. Each time his heart rate would go up, he would run a temp and you could see him kind of fold in on himself. Each time massive antibiotics got. My guess (and just a guess but as a nurse and having been through this too) is that when they were doing the intervention radiology part of things to fix the bile leak they introduced bacteria to her blood and that is what caused the sepsis (Sepsis is bacteria in the blood). We never really found a definitive cause for my husband’s they wanted to blame it on scar tissue in his liver but that was never found for sure. There was probably a who cascade of things that contributed to it. When a person is that sick the liver (and the kidneys too) have to work harder so the stress of that and the recent surgery may have caused the elevated ammonia level.
Make sure she has the biliary emergency card. She can be transferred to another hospital if needed to give her more advanced care. My husband usually started out in our local hospital but he was always transferred to the cancer center right away…..at my insistence.
KrisV
kvolland
SpectatorThank you everyone for your kind thoughts and words. It has been very helpful to know both of us were loved by so many.
Here is the link to the obituary from the funeral home. The Celebration of Life will be Saturday May 9th at 3 pm. I know most you cannot make it but if you think about it raise a glass at 3pm to Mark. He lived a good dark beer but Gatorade or water will do.http://www.cattermolefh.com/notices/Mark-Volland
Love, KrisV
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